Monday, October 31, 2016

Complicated expectations

Often times my posts are written in my head while I am out and
about as the random thoughts filter through my mind. Some of the time I
actually find myself smirking realizing all of the craziness that is occurring
in my head during that time. It is completely baffling to me how one
minute I am "worried" about Sonzee's developmental milestone
achievement and then a moment later her milestones are the most distant
thoughts as I am overwhelmed with happiness that she is just breathing and we
aren't at the top of the coaster looking at the end of the track.

This honestly
happens multiple times throughout my day. Thoughts that contradict
themselves bombard my brain and confuse me to the nth degree. To give it
a visual representation, imagine that you are standing in a dark room and there
are thousands of words flying at you from all angles. Some of the words
are huge, others are tiny, but all of them are white and bright. They go
by so quickly it can be hard to make out what they say. It makes
processing what I really feel an extremely daunting task. I have to yell
at myself to focus if I want to make any sense out of the situation. Then
I start to dissect my thoughts. "Should I think this?"
"Shouldn't I just be happy with where things are?"
"There are other children worse off. She has been worse
off." Etc. Etc. Etc.

It is when things
are seemingly stablethat
I am less afraid to admit to myself that I wish my 20 month old would be able
to sit on her own. I know I amallowed to
acknowledge this feeling, and I know it is acceptable, but I feel petty a lot
of the time for caring about her accomplishing milestones. For each thought that pops into my mind, its
counterpart is right there by its side. "I
wish she would not succumb to the typical stereotypies and sensory issues of
having a CDKL5 disorder, such as hand chewing." (That really is sobenign,why does it bother me?)
"I wish she would bear weight on her legs", (they are getting
stronger). "I wish she would notice
me when I look at her face", (but if I make noise she does). "I
wish she would show her siblings that she loves them", (On occasions when
our oldest plays with her arms and talks to her excitedly, Sonzee gives her the
biggest grin). My mind is constantly playing devil’s advocate with
itself. The reality of this life and the guilt for feeling unsatisfied at
times are so intertwined with one another.

I want her tojust be normal, but I want her
to be who she is meant to be. Ireally
do not have any specific expectations when it comes to what Sonzee will achieve
in her lifetime. We meet every 6 months to create goals for her and most
of the time we just keep them the same because they have not been met. I
have hopes and dreams galore, but who knows when or if they will be
accomplished. I do not want her to ever feel like she has let me down nor
do I want to place unnecessary pressure on her, and I want what any parent
wants from their child...for her to grow up and be happy. It is annoying
to me that every single aspect of her life has to be so complicated.